Children with special needs such as autism and other conditions can be extremely loveable and endearing and yet simultaneously hard to hang out with—especially at holiday time. While many people find the holidays stressful, there is a special twist for families who have children with special needs. The frequent behavioral challenges can make for gritty and unwelcome moments. By knowing what is realistic to expect and being prepared with coping strategies, families can sidestep many problems and enjoy their time together as much as possible.

On Wednesday, November 13, I recorded a conversation with Jennifer Lingle, M.Ed., founder and president of the International Autism Association for Families and Educators. Jennifer is a compassionate and experienced teacher, and she has made this recording available as a free download at http://www.autismeducates.com/getting-through-the-holidays-recording/

Our conversation covered these questions among others:

What can I do to prepare my son and my family for Thanksgiving? I am really nervous about our 3 year old son's behavior (and our family's reaction to him).

Last year, our six year old daughter with autism kept taking the ornaments off our Christmas tree. What can we do so that we can enjoy decorating our home, while still respecting her needs?

We have three boys and two are on the autism spectrum. I often feel bad for our other son. It seems that all of the attention goes to the other two, no matter how hard we try to give them all attention. Do you have any recommendations?

I am a father of a 7 year old boy with Asperger's. His mother and I are divorced and this is our first holiday season separated. I am trying my best to make our home cozy and comfortable for my son. How can I and my ex-wife make this transition easier?

Listen in and see what may help your family. Keep in mind that holiday time is exciting for children, and children with special needs are no different. In answer to a common question, for help in picking out toys, check out the “Top Ten Things to Consider When Buying Toys for Children with Disabilities” http://www.kidsource.com/kidsource/content3/toys.disabilities.html

To wrap it up, understanding each child's individual characteristics is the key to enjoying the holidays. As opposed to wishing and pushing for “normal” holidays, understanding and accepting your unique child, is the best way to plan and enjoy your time together. An important lesson that all children can teach us is that parents’ time and attention is exciting and wonderful. Try not to get caught up in the consumer oriented rush. Connect with family and friends and all whose lives we touch. Let’s enjoy our time together.

Despite the rumors of an 80% divorce rate, couples
raising children with autism are sticking together and doing the best they can
under trying circumstances. During the past five years, three research studies
have provided significant evidence that couples are not breaking up because of
the heightened stress they are experiencing.

Psychologist Brian Freedman, PhD, was the lead
author of one of these studies and clinical director of the Center for Autism
and Related Disorders at Kennedy Krieger Institute. These findings debunked the general
understanding about divorce rates among parents of children with autism. Dr.
Freedman and his research team found that 64 percent of children with an autism
spectrum disorder (ASD) belong to a family with two married, biological, or
adoptive parents.

Previous research clearly established that parenting
a child with autism is stressful and puts pressure on the couple's
relationship. Studies have found couples
with a child with autism experience more stress than couples with typically
developing children or couples with children with other types of developmental
disabilities. Mothers of children with autism report more depression than those
with typically developing children, while fathers report they deal with the
stress by distancing themselves and becoming less involved with the family.

This Sunday, November 10 at 9 PM Eastern, Brian
Freedman, Ph.D. will be our featured contributor on "Guy Talk" at
www.autismbrainstorm.org discussing the research and implications for families
raising children with autism and related conditions. We will talk about how fathers are handling
these challenges in their families.

StoryBook Play is an idea that has been bouncing around in my brain for a long time. In my experiences working with children on the Autism Spectrum and their families I have repeatedly seen the struggle that both parents and children have in learning to play. Many parents forget what it was like to play, or struggle to stay focused on the purpose of play (hint: to have fun) when their child appears uninterested. From these observations and my experiences I have developed an approach I call StoryBook Play.

I thought it might be helpful to start with a basic attempt to explain what StoryBook Play actually is. I will go into details, background and tips in the future, but want to start with the simplest description.

Background assumptions:

1. Play is good. There is lots of research that I will likly post in the future but let me sum up- play is good. For the brain, for social skills, for connecting to others.

2. For some kids, play is hard. It's abstract, confusing and requires a lot of effort that, especially for kids on the Autism spectrum, is overwhelming. These kids need to learn that play can be fun.

This is where you, and StoryBook Play come in. StoryBook Play could been seen as 2 parts:

THE BOOKS- StoryBook Play books are written to be easy to play. Simple, basic narratives with clear actions. It is not about the pirates secretly fighting each other for treasure and learning the true meaning of friendship. It's about pirates walking up the steps to the boat. They sail in the water. They land and drop the anchor. They find the treasure. It's concrete and easy to translate into playable action.

THE APPROACH- In a nutshell it's about having fun, and finding a way to set yourself and your child up for success when it comes to playing with toys. It's a way to intentionally be available, present and accepting of your child to support them in doing something that may be very hard for them. Hope this helps.Questions? Comments? Please leave them below!

StoryBook Play is the creation of Alternative Choices therapist, Kelly Peters. Kelly has been working with a wide range of clients but spent much of her early career developing play and social skills in children with Autism Spectrum Disorder. She can be contacted at kpeters@alternativechoices.com

Holding on and letting go, pushing and pulling-these are overarching themes of parenting for mothers and fathers. This normal developmental process can be even more stressful, especially for mothers and the rest of the family, when a child is growing up with autism or other developmental issues. This struggle is captured with honesty and keen insight by Glen Finland in next stop: a memoir of family, which I highly recommend for parents of typical children as well as those with developmental challenges.

After being her son's advocate for so many years as this mother puts it, "How could I just shut off my dependency on his dependency on me?" Nonetheless she describes how she learned to back off in small steps as her son, David, who has autism, learned to ride the Metro in Washington, DC.

While she describes how "learning-to-let-go business is killing me." She observes how her son "becomes more and more independent in that process."

This learning to let go is part of the unfinished business of motherhood which needs time and support to evolve in adolescence and early adulthood.

When I talk to parents in my professional role, the topic of what happens when our child grows up is never far from the conversation. As a reader, I found this a book to savor. I didn't want it to end.

As Aristotle put it, “Anybody
can become angry - that is easy, but to be angry with the right person and to
the right degree and at the right time and for the right purpose, and in the
right way - that is not within everybody's power and is not easy.”

As if that is not a big
enough challenge, it is the only socially acceptable emotion for men to
express. Conversely it has traditionally been considered socially inappropriate
for women to express anger resulting in a significant challenge for couples.

Anger is often
triggered by the thought or sense that something is unfair. Anger is
energizing; the adrenalin released can be felt in the body. Managing our anger involves
the actions and decisions we make in response.

What triggers an angry response? There are many possibilities:

The targets can be: our
child, our partner, a relative or friend, a school system, a doctor, etc. Guys
often don't like to admit being angry. It helps to have some synonyms handy
such as: pissed off, grumpy, irritable, irked, impatient, exasperated, miffed,
etc.

One guy talked about how when he is angry
about a situation, he asks himself “what am I sensitive to?” He reflected that in the heat of the moment
his thinking cap is off. His child with
autism has helped him to look at his own trigger points and sensitivities. He
needs someone to tell him to step away and get a grip. He realizes that getting
physical is a mirror for his child and the worst thing he can do when his fight
or flight reflexes have been triggered.

Another guy tries to be
sure he is not angry when disciplining his daughter. He sees discipline as
correction and teaching. He remembered how anger can be part of the cycle of
grief. He has observed how fathers of children on the spectrum often seem to have
anger looking for a target. It could be harder without a target and you go
around looking for one.

Another
important point was the observation that frustration may be the gateway emotion
to anger and awareness that losing control is around the corner. Once someone goes
over the line, the ability to identify options gets impaired.

One father shared how
he is careful to realize that he is modeling to his children and strives not to
model anger. He sees his anger arising when things don't go his way. On the
other hand, there are times when you should be angry such as when your kid is
getting bullied, and it is good to shake things up by responding in a
constructive way.

Another guy grew up as
a student in special education. He was bullied and teased relentlessly. Every day
he had to watch his back and had no one to turn to. He was confused and angry.
Now he has a son with a verbal apraxia, and he is passionate about protecting
his son from the torment he went through growing up.

What helps a man? Or a
woman for that matter? Telling someone to calm down is the worst thing ever. Letting
him or her know he is not the only one who's angry can help in redirecting into
a problem-solving mode.

Expressing concern or
empathy can also be useful. As one guy
put it saying “I get you; I understand you man. That really helps.”

Accepting our feelings,
our child, and ourselves is a prerequisite to managing our responses to anger. So
for men and women, when noticing anger, take a step back. Stop and think. This
may not be easy or come naturally but learning to identify anger as it is
arising can help us reel in our impulses and find options for our children and our
families.

The average guy finds
it hard to sit still and listen. We jump
to problem solving especially when we lack the words to express what we are
experiencing. Yet we yearn for
connection with our children. On July 7, I moderated “Guy Talk: Fathers
Roundtable” at www.autismbrainstorm.org
with 7 guys who spoke openly about their struggles to be present with their
children.

Start where the child is. Watch, wait,
observe. You will often find out something unexpected that you can build on.

Avoid interrupting; this makes it hard
for one’s children and wife. Learn to listen and wait until people finish what
they are saying. Interrupting usually comes from thinking about what you're
going to do or say instead of being present with what the other is saying. Try to
allow a pause after someone finishes speaking in order to avoid interrupting.

It can be frustrating to engage a child who
prefers video games. Limit screen time. In the summer, there is more unscheduled
free time which may be more challenging.

When a child has a physical disability it
forces a father to pay attention since she needs hand over hand assistance with
everything, but there can still be a lot of frustration.

Besides being patient and listening, show
interest by asking a question when there is a small pause. Get your child to
explain what he is interested in.Learn
the names of the characters in their favorite movie, etc.We may have to accept that we do not like the
activity in order to interact with our child.

Showing interest in what your child is interested
in is key. To ask a child to enter our world, we have to enter his first.

Real life with a child with special
needs is different from the epiphany that one might see in the Hollywood
version. There is no magical transformation. Rather something happens between
you and your child and you want to change, to be a better person, more patient.

Sometimes we can be impatient for our
child to learn a simple skill as such swinging in the playground.We may just have to be patient and wait until
our child figures it out. By taking this approach a father can enjoy himself and
his child in the moment.

Moments of frustration
can be transformed when we are able to stay calm and change into a problem
solving mode. This can be a lens of
opportunity which enables us to figure things out. So what about a meltdown
when a kid is freaking out? In our guy talk, the difference between a tantrum
and a meltdown was discussed.

The tantrum suggests communicating the intent
to get something whereas a meltdown is an overload whether sensory, emotional,
or cognitive.Both call for the adult to
be calm and receptive in order to help a child to organize herself. It's
important to wait it out and talk about it later. The child's sensory profile
may be a key to understanding a meltdown.

Presence means controlling yourself and
providing calm thereby modeling what it means to de-escalate from the meltdown
and sending the message that we are in it together. When it's over we will
figure it out and where to go from here. If possible, find a way to buffer the
overload or help the child get out of it. It is essential to use our
relationship during the hardest times to figure out our options.

So raising a child with
autism or other special needs is moment by moment. Average guys show their love and support
through action, but sometimes pausing by stepping back and being there calm and
present is the first step. When action is called for, this pause can help men
to use our desire to find solutions more effectively.

As we take a break for
the Fourth of July in the United States, we are reminded that autism and other
special needs never take a holiday. How can we enjoy life and improve our
family interactions while dealing with the daily stresses that go hand-in-hand
with raising children who have challenges?

When I ask parents what
they are learning from their children with autism or other special needs, the
most frequent answers I get are patience and being present. What do these
parents mean? How do they work through their frustrations and build a
satisfying relationship? It's not easy but many families are
becoming stronger and more connected than one might imagine.

This Sunday, July 7 at
9 PM Eastern, I will be hosting a Fathers’ Roundtable through a Google hangout
at www.autismbrainstorm.org to discuss how fathers are handling these
challenges in their families. Mark your calendars, and if that time is not
convenient you will be able to watch a recording of our conversation on YouTube. Our June conversation can be viewed at http://www.youtube.com/watch?v=85eYcDI2S2A.

Becoming a father for
the first time in 1979 was a life-altering experience. Those first smiles,
first steps, and first words seemed magical. Then at 18 months, my son stopped
talking, began flapping his arms, and fussing.
From those first symptoms until now, I have been living and learning
about how to be a father and how to help other men raising children with autism
and other special needs. This article summarizes some tips for men and their
partners.

First, men need to
learn about autism. When my son was diagnosed with autism, I thought my head
was going to explode. I couldn't get the word autism out of my mouth. What
starts the process of being able to talk about it is stepping up and getting
involved in caring the child’s needs. A father finds himself useful when
actively involved in helping his partner meet their child's needs. There is an
overwhelming amount of information on the Internet. I recommend starting with major organizations
such as the Autism Society, Autism Speaks, the Arc, etc.

Second, men need to
revisit and adapt traditional male norms. There is a typical male code for
handling overwhelming emotions. In the face of an overwhelming experience such
as autism, men are expected to keep the lid on emotions, take charge of
practical details, support others, and take on the challenge as a chance to
problem-solve or even as a test of traditional masculinity. However, men are
not supposed to lose control, to openly cry, to worry, or to express
overwhelming sadness. Unfortunately this doesn’t work well with mothers.

Asking a man how he
feels does not start a conversation. Instead
try guy talk, such as:

Let’s
figure out a plan to go forward. (men do best with some
kind of plan)

Third, men need to
strengthen the bond with our child. This is the same child you fell head over
heels in love with at the moment of birth, and your child needs you. Although men
certainly need to learn how to listen and open up, they relate best through action.
I wanted to be a better parent than my father when I held my son Tariq for the
first time in 1979. I also expected Tariq to become a better son, a better man than
me. I looked at my son and saw myself, only better. His diagnosis of classic autism
shattered that reflected vision like a broken mirror.

This broken mirror
leaves many fathers, especially those of boys with autism, feeling powerless
and shamed, and 80% of children diagnosed with autism are boys. They love their
children and do not want to fail them. Men respond better to having some kind
of action plan. So the action plan I give men is: Find something you enjoy
doing with your child. You may have to start with something your child enjoys
that you yourself are not really into. But start with that. Make contact. And
from that contact, find the things you both enjoy doing together.

Fourth, connect with
other men in similar situations. Find other men to share thoughts and experiences
with at your child’s school or at a local autism organization. The Fathers’
Network at www.fathersnetwork.org is a great place to start on the Internet.
There are many essays by fathers there who are raising children with autism and
other special needs.

Fifth for women, remind
your partner that you don’t want or need him to fix everything, merely to
listening and showing his caring is often enough. Tell him what he is doing
right which helps him feel valued and secure. When possible ask for help in
finding solutions--even if you think you already have one. This makes it easier
for a man to listen and not be overwhelmed by emotion. Remember to plan time
together as a couple. This is the first thing to go under the enormous pressure
and taking care of your relationship is vital for both parents.

Don’t forget to find
something you enjoy doing with your child. It can change your life. Fathers and
mothers do not control autism; there is no cure, and it waxes and wanes often
unpredictably. Parents do have a lot of
control over the relationships in the family. Focusing on your relationships is
an action plan—see where it can take you.

Setting aside a day to honor
mothers has ancient roots, but true gratitude requires expression beyond flowers,
cards, and going out to eat. A mother’s love is boundless, and this is a time
to reflect on the sweetest memories of our mothers and grandmothers. Beyond
honoring the woman who raised him, the most important thing a father can do for
his children is to love and appreciate their mother. So here is a plan for
fathers of children with autism and special needs to honor the devoted mothers
of their children.

Being overwhelmed by the
responsibilities of motherhood is normal, but it can be even more intense when
a child has special needs. I spend a good deal of my time as a psychologist
listening to mothers. Mothers often seem
relieved by giving voice to their struggles—particularly the guilt about not
doing enough or missing something they should have done or thought about. This
maternal protectiveness is driven and powered by a profound sense of
responsibility and guilt. I have come to
learn from listening to mothers that this is a part of the unwritten job
description of motherhood.

Here’s the plan. Tell your
partner how much you appreciate her and everything she does for your children.
Be specific about all the wonderful things she does and how hard she tries. Ask
what you can do to make her job easier. Gently keep asking and showing up to do
stuff. This is how to be a good man in your situation. Help her to take a
breath, literally and figuratively. Most likely this may help her feel
better—it may even help her appreciate herself and you in the process.

On Monday, March 25, I was part of “Voices in the
Family” a public radio show with host Dan Gottlieb. Eustacia Cutler also lent
her voice to the discussion. Eustacia is the mother of Temple Grandin, a
well-known adult with autism, an author and speaker. Dan has been living with
quadriplegia for 33 years, and I have a 33 year old adult son with autism. We had a wide-ranging and soul searching
conversation discussing the worries and the heartaches as well as the
extraordinary lessons that children with autism teach us about acceptance and
about what it means to be family. The
podcast of that discussion is now available through the WHYY website.

Autism Awareness Day Philadelphia Zoo, 2007.

What does it mean to be aware of and to accept autism? Last March 1 in 88 children in the U. S. were
diagnosed with autism. Just last week the federal government again revised the
prevalence of autism upward, saying the developmental disorder now affects 1 in
50 children. All of these children and their families are profoundly
affected—their parents, their brothers and sisters, their grandparents, their
friends, and the larger community. How do we deal with awareness or acceptance
of an issue that may not change or only changes slowly?

While the interventions for autism understandably
focus on the symptoms, services tend to ignore the big picture of the family which
includes parents and siblings, and the family’s overall health. Each child with
autism lives with a family, and that family lives with each child. While the
symptoms change and often lessen over time, they don't go away, so families
must learn to live with these problems long term.

Eustacia Cutler, the author of A Thorn in My Pocket,
talked about what it was like to raise her daughter in the 50s when autism was
not part of the national conversation. She explained how she was thrown off by
the lack of connection between herself and her daughter. In her words, "I
forgot who I thought I was when I finally faced it. A baby needs a mother in
order to know that she is a baby, and a mother needs a baby to know she's a
mother.” The loss of connection impacts the entire family—not just the child
with autism. We must go on, but how?

What does it mean to accept autism, or any incurable
condition for that matter? How do you avoid getting stuck in it? For starters
acceptance does not mean giving up. It does not mean resignation. It does not
mean liking the situation you're in. Acceptance does mean the responsibility to
do our best, facing each day with courage, and changing what is changeable. We
can rebuild and nourish the bonds within our families noticing what is right
and what is working at any given moment. It means getting together whether on
the floor or at the table and enjoying each other's company and interactions.

Ultimately acceptance is not about making peace or
war with autism. Sometimes we may be at peace, and in the blink of an eye we
may feel at war with a situation or problem. Learning to look into and face your
specific circumstances will help calm any storm of thoughts, emotions, and
sensations. Then we can see our options,
and make a reasonable choice. Thus acceptance involves holding everything about
our lives gently with balance and a measure of serenity. The love we give to a
family member with autism and the love we get back can indeed ground us to the
earth and all humanity.

At the end of the show, Dan Gottlieb spoke about
“Zorba the Greek” who used the phrase “full catastrophe”to
describe the wide spectrum of life—all the joys, sorrows, tragedies, and
possibilities that open as we live. This complexity and fullness doesn’t
take years to experience. When we learn
to pay attention to what is going on, awareness of autism and its impact on us
and our family can occur in days, hours, or even minutes. We can be angry, relieved,
sad, hopeful, ashamed, scared, and peaceful before we even manage to get
dressed and have breakfast in the morning.

What I've learned and what I see
families learning on their way to awareness and even acceptance is to respect the
diversity of viewpoints they may hold. We
may each have a unique point of view,
and healthy families learn to honor each member individually. Awareness
includes the understanding that everyone is not seeing and feeling the same
thing at the same time. Our perspectives are different, but they do not have to
be the root of conflict and struggle; they can form the strong base of
acceptance and family bonds.

Tense uncomfortable feelings among
family members often come from longing for things to be different from how they
actually are and sometimes even blaming each other for that reality. Most
likely we are all doing our best under trying circumstances. Giving everyone
the benefit of that doubt, including the family member with autism, that's
acceptance in the family.

My head felt like it
was going to explode when my son was diagnosed with autism in the mid-1980s. The
diagnosis explained why he was flapping and spinning, but the “A” word stuck in
my throat. Some parents, mostly mothers, have told me they were relieved when
they finally received an official diagnosis because they knew something was
wrong. Regardless of where one fits on the spectrum of reactions, the mind goes
fast forward to the future and can't help wondering what will happen:

How well will my child be able to
communicate

Will these behaviors ever go away?

What will happen when we are gone?

Will she live independently?

Can he have an intimate relationship

Since
autism is invisible and diagnosed through behavioral observations, it is
natural to focus on behavior. It’s natural to imagine that if we can make the
behavior go away or at least minimize it, then a child may recover. Some of the
behaviors of our children on the autism spectrum can also be so disruptive that
this becomes our entire family focus. This article will attempt to provide a
perspective on these questions which trouble most parents.

Initially
most autism treatment focuses on reducing problem behaviors. Our children need
to learn adaptive behaviors to be accepted by others and to bond with their
families. The positive behavior
supports approach helps parents and professionals address issues in a relatively
new way. Instead of using traditional rewards and punishments, positive
behavior supports assumes that all behavior is communication. Parents,
teachers, and therapists collaborate to determine what the child is attempting
to communicate and teach skills and alternative behaviors to meet the child’s needs.

What
we know from recent research

Children with autism
grow and mature as we all do; the symptoms may change but rarely disappear
completely. Recent research from Deborah
Fein and colleagues (2013) shows that a small percentage of children diagnosed
with autism does move off the spectrum.
According to the researchers, these children learned to communicate and
socialize much like their typically developing peers, but they remained mildly
affected by conditions, such as anxiety, depression, or impulsivity, which slightly
affected their social functioning. The children who lost their diagnosis had
milder symptoms in early childhood, learned to process faces through intensive
intervention, and had fewer self-stimulatory or repetitive behaviors.

Seltzer
and colleagues (2000) found a pattern of change from childhood to adolescence
and adulthood. 82% improved in communication and social interaction, and 55%
showed less repetitive behaviors. These researchers concluded that the symptoms
of autism lesson in severity over time and that the best outcomes occur for
those with higher IQ scores and better language skills. Overall this shows
compelling evidence that the troubling behaviors parents struggle with are
likely to change over time. These
research findings are cause for optimism if supported by adequate services in
adolescence and adulthood.

Another
team of researchers, Taylor and Seltzer (2010) found overall improvement in
autism symptoms and internalized behaviors in young people over a 10 year
period. Rates of improvement slowed after leaving school though improvements
did seem to continue, just not as much or as quickly. By age 21, young people
with autism who do not have an intellectual disability stop receiving services.
After that point in time, these individuals improved at a slower rate than
individuals with intellectual disability who still had services. So given what we know today about how children
with autism grow and develop, with adequate resources and support, it is
realistic to expect progress and lessening behavioral challenges.

Surviving
and Thriving

In the meantime, while
we wait for the hoped for change, how do we live with the uncertainty of what
the future holds for family and child? How do we handle the next tantrum or
meltdown? What about the struggle for services? Here's the approach that I have
developed for myself and that I teach families through my writing, speaking,
and counseling:

Like the weather, your unpleasant
feelings will pass.

Sometimes it may seem
that no progress is being made; the child may take 2 steps forward, 1 step
back. Over time our children do grow and change, just like everyone. It takes
hard work by all involved—families, professionals, and children, teens, and
adults living with autism. Sometimes it
helps to remember that we are all doing our best.

Facing
the Future

Parents cannot control
the outcome for any child, but we can have a full and rewarding relationship
with a child growing up with autism. There is solid scientific evidence that individuals
with autism continue to develop in adulthood. This makes it reasonable to
expect continued slow steady progress just as with typically developing adults.
We never stop being parents—our job just slowly changes through the ages and
stages.

I became a typical father in 1979. It was a dream come true—those magical first smiles, first steps, first words. Then in 1981, my son stopped talking, stopped playing normally, and began flapping his arms. From those first red flags of autism until now, I have not stopped experiencing autism and the family—the central theme of my life and work—counseling, teaching, and writing about the impact of autism on families.

The behavioral challenges of autism are often so consuming that it can be next to impossible to keep the needs of your family in perspective. From the outside, it may look like the child is the boss or king of the family. Parents often live holding their breath until the next problem or meltdown. The whole family can be immobilized by the unrelenting stress.

No small wonder that the interventions focus primarily on reducing problem behaviors and promoting learning and development. This necessary, but narrow focus on trying to eliminate troubling symptoms can feel like drowning in quicksand. While in the big picture, your emotional life, your marriage, and your other children are on hold indefinitely. Here are some lessons I have been learning and teaching regarding the big picture:

Give yourself permission to open up to your thoughts and feelings, which fall along the parents’ spectrum of fear, guilt, depression, anger, and anxiety over the lost dream. Take a few slow breaths and notice your reactions. Some take the diagnosis in stride, but more commonly it’s an emotional bomb, and it takes time to regain your footing and go on to an uncertain future. Like the weather, your unpleasant feelings will pass, and open the door to hope and celebration in every little step of developmental progress.

Spend some time each day joining your child on the floor having fun, following your child’s lead, and building connection. Your child with autism is still a child and needs more than therapy in her day. Parents cannot control the outcome for any child, but we can restore a full and rewarding relationship with a child growing up with autism.

Try to spend at least a little time each day with your other children or attending even minimally to their unique needs. Typically developing brothers and sisters feel rejection when their sibling doesn’t engage with them, sadness over not having a playmate at times, and sometimes embarrassment outside the home. There are special lessons to be learned from each child.

Work to understand the different perspective of your partner. Mothers are consumed by the day-to-day needs of raising a different kind of child. It’s hard to take a break from needs that do not diminish. Fathers have a difficult time talking about their feelings especially when unable to fix the problem. While reports of an 80% divorce rate are unfounded, evidence does support increased stress, anxiety, and depression in men and women.

Take care of yourself and your relationship. Appreciate what your partner is doing right. Make time for each other. You need each other more than ever. All children need active, positive, energetic parents. In a very real sense, children cannot thrive if their parents are drowning. It might be impossible to have “date nights,” but it is conceivable to do little things for each other and together, thus nurturing your relationship.

This is the big picture of what I believe it takes to survive and thrive with autism in the family. Trying to focus too much on behavior and trying to change someone with autism can block a family’s happiness. This may seem impossible with your child’s behavioral issues, but doing as much as possible to nurture your entire family can make the impact a little easier for all. This does not mean denying real problems. It just means paying attention and cultivating the moments we might overlook or ignore, when problems are absent, such as our children running to us when we get home, or our partner glad to see us after a long day at work or home or both. This is a lifelong search for meaning and connection, while becoming our best selves as family.

Speaking from my own experience, I thought I would change my son, but after years of relentless effort I realized that he changed me. He never spoke again, but this is how his autism has spoken to me day by day.

‘Autism in the Family: Caring and Coping Together’ candidlyguides
families through the many challenges and rewards of raising a child with autism

BALTIMORE,
MD – January 10, 2013 – How can parents provide the best support
for their child with autism andensure
that the whole family’s needs are met? Psychologist and father of an adult son
with autism, Robert A. Naseef, Ph.D., combines his personal experiences and
professional background to share insight into the complex care of children and
families affected by autism in his latest book, Autism
in the Family: Caring and Coping Together. Weaving years of clinical
practice with first-hand insight, Dr. Naseef helps parents collaborate
effectively with professionals and build a strong circle of support with family
and friends so that they can provide the best care for their child with special
needs. With this book, Dr. Naseef shows parents how to better understand and
guide their child’s behavior and development, manage stress, and tackle other
challenges such as meltdowns, food sensitivities, sleeping, and toileting.

Completely revised from his popular book, Special Children, Challenged Parents, “this
new book focuses more narrowly and deeply on the challenges that the autism
spectrum poses for family life,” explains Dr. Naseef. “Over the last decade, I
have traveled around the country and spoken to thousands of people struggling
to accept autism and do the best job possible for their families. Seasoned by
24 years of professional practice as a psychologist and integrating advances in
research and treatment, I have attempted in Autism
in the Family to help families navigate the emotional landscape and the
practical roadmap through the lifespan—from early childhood through the school
years and adolescence on to adulthood.” The book also offers rare in-depth
coverage of the father’s experience in parenting a child with a disability.

Autism in the Family: Caring and
Coping Together has
garnered
much praise:

“A comprehensive view of autism across the
lifespan… Naseef encourages readers to understand and accept those with ASD,
and to ultimately connect, adapt, cope, hope, and flourish,” said Emily Iland,
M.A., president of the Autism Society of Los Angeles.

“Insightful, accurate, and
very personal…should be helpful to any parent whose journey includes a child
with autism. Naseef has provided important information in a caring and
compassionate manner,” explained Kenneth Thurman, Ph.D., professor of special
education at Temple University.

“An excellent resource for
families and professionals alike. I am moved and inspired by the stories of
Naseef and others that are woven in, and will be sharing this [book] with
students, families, and colleagues,” said Helen McCabe, Ph.D., associate professor
at Hobart and William Smith Colleges.

“Fathers often have
difficulty expressing their feelings and this book should be required reading
for all fathers who have a child with a disability,” said Temple Grandin,
author of Thinking in Pictures.

A warm and down-to-earth
guide for parents and an enlightening read for the professionals who work with
them, this book is a valuable companion to families as they love and support
their child with autism. For more information on Autism in the Family: Caring and Coping Together, and to read an
in-depth Q&A on Dr. Naseef’s perspective on how to help families navigate
the emotional landscape of autism, visit www.brookespublishing.com/autism-in-the-family.

About the Author

Robert
A. Naseef, Ph.D. is a psychologist at the Philadelphia-based Alternative
Choices, where he specializes in working with families of children with autism
and other special needs. Through his experiences as a parent and professional,
Robert relates well to both audiences and is a sought after speaker around the
country. In 2008, Robert was honored by Variety the Children’s Charity for his
outstanding contributions over the past 20 years to the autism community.

No matter what
tradition you celebrate, holidays are often filled with stress. There is a lot of pressure to make the
holidays perfect and fun while enjoying yourself. When you add to that the stresses around
having a child with special needs it can become even more overwhelming.

Everything needs
readjusting in your family life and you are left with many strong emotions. It
is on you to make warm experiences and wonderful traditions. It’s
important to sit back for a few minutes and reflect. What is it about the
holidays that you’ve always enjoyed?
Special foods? Pretty
decorations? Certain activities? The gifts?
All of it? Whatever it is start
there.

Some things may need
modification in order to enjoy the holidays with your child. For example, if there is a danger of injury on
fragile decorations, you may have to put them higher out of reach, or get new
ones that are less fragile. Some special
foods may not be able to be served.
These modifications can be disappointing, but if the goal is a nice
family holiday, we can adjust.

Make the demands on
yourself realistic. Try to put some limits on how much you do so that you can feel some of the joy, not only the
frustration. Make sensible lists and
work on things one at a time. Looking at
the whole holiday season is less overwhelming if you take it in small
pieces. You may have to manage your
expectations to lower your stress level and make the holidays special.

For gifts, think about
what will put a smile on your child’s face.
Maybe she can’t handle the new games that every other kid is playing, or
the current popular book series, or new sports equipment. But she may be thrilled with a cushy new
ball, a big soft beanbag chair to flop on, a favorite food (within dietary
constraints), or even an hour away from the noise and confusion to walk outside
or go to the playground. The National
Lekotek Center has recommendations on the “Top Ten Things to Consider When Buying
Toys for Children with Disabilities” at: http://www.kidsource.com/kidsource/content3/toys.disabilities.html

These may not be the
holidays you dreamed of, but you can still offer your family the love and
warmth that really matters. More than
new toys, it is parents’ time
and attention that is so exciting and wonderful for children. In the consumer driven rush this holiday
season, let’s not forget what’s really important. Let’s try to connect with our families and
friends and all whose lives we touch.
Let’s enjoy quality time together.
As Ralph Waldo Emerson wrote many years ago, “The only true gift is a
portion of thyself.”

On November 3, 2012, the Lancaster County Autism Mommies,
The Tommy Foundation, and Autism Spectrum Connections sponsored a parent
workshop which I facilitated about taking care of your marriage while raising a
child on the autism spectrum. Everyone present, myself included, learned how
appreciating your partner can lead to necessary conversations that have been
difficult to impossible to have.

The day began with men and women attending two
separate workshops. I facilitated a fathers group where men opened up about
their shattered visions after the autism diagnosis. The men also discussed why
it would be hard to be a mother raising a child with autism. Simultaneously,
psychotherapist Roane Funk facilitated a mother's group about finding the
balance from hope to acceptance. The women had a conversation about why it
would be hard to be a father.

The initial workshops warmed up the participants for
what was to come. After taking a break, both
groups came together as couples in the workshop I then facilitated. The men's group led off by sharing why they
thought it would be hard to be a mom while the women listened. The women took
their turn after the men.

Then I asked everyone present to share what they
appreciated about their partner. For example, women heard men who appreciated
their leadership in caring for the child they both love dearly. Men also showed
appreciation for how hard it is for a mother to take a break. Men heard how
women understood their pride was wounded especially when they could not fix or
protect their families. Men and women alike talked about how there was less
closeness between them while living in a crisis mode. There was incredible
tenderness in the room as couples came together for a group photo.

A week later I talked to Shelley Koch, the president
and cofounder of the organization. The Lancaster County Autism Mommies is
concerned about taking care of the whole family while raising a child on the
spectrum. This includes taking care of
the couple and the typically developing siblings. Shelley observed how the
experience people had in the workshop inspired conversations later.

According to Shelley, when you hear that your
partner understands, you are willing to be more vulnerable. This openness makes
it possible to engage in the kind of conversations that can solve prickly
problems and restore some of the closeness lost while living in a crisis mode.
Our morning together was the beginning. Of course, it is up to each couple to
find the support they need to take care of their marriage and family.

They've been standing on the brink of divorce. For
seven years, they had devoted themselves tirelessly to their son with autism.
They were worn out; all the joy had left their lives despite their son having
made dramatic progress. Their boy was included in a regular class with
supports; something they never dreamed of.

Their marriage was another story. He thought she no
longer cared about their marriage. She thought he never noticed and appreciated
what she was doing for their children. They both agreed that their only
interaction was about their disagreements. They decided to take a step back
from ending their marriage and came back to my office where four years ago they
had recovered from their initial devastated response to their son's diagnosis
on the autism spectrum.

The tension they have been living with had become
unbearable. They were tired and irritable with each other, but they said that
they still loved each other. They decided to give it another shot. They had experienced
many good years together, and they wanted to believe they could be happy with
each other again. They wanted their children to live under the same roof with
both of them, but they couldn't go on being miserable with each other.

With some guidance, and a neutral mediator, they began
talking to each other more kindly. It made a difference. They began sharing
responsibilities, and they were less volatile with each other. Nonetheless,
Harry couldn't understand why Marianne was not returning his affection. Despite
his efforts to repair the marriage, she just wasn't feeling it.

About a month ago, Marianne's aunt went into hospice
care, so she took a three-day weekend to go from Philadelphia to Chicago to be
there and say goodbye. Harry stepped up and took their boy to his weekly speech
therapy expecting to return to his office after the session. Unfortunately,
there was an emergency in the clinic which took time to resolve, and therefore
Harry had to miss an important meeting at work. Filling in for his wife,
full-time for three days seemed to lead to an epiphany.

When Marianne returned and they sat with me the next
week for their couples’ session, Harry spoke openly and honestly about how
frustrated he had been taking care of everything by himself. He had gotten a
glimpse of what his wife handles day in and day out in addition to her
demanding job. He praised everything she had been doing for years including
tolerating his irritability.

Marianne breathed a sigh of relief. She wiped a tear
from her eye, and then put her hand in his. “I just wanted to be appreciated,”
she told him, “maybe now we can be closer again. I sure hope so." There
was more work to be done in repairing their relationship, but they had turned
the corner and began looking forward for the first time in years.

On October 11, 2012, at the Autism New Jersey Annual
Conference, Rodney Peete spoke candidly to 1000 of us present about how he was
in denial after the diagnosis of his son RJ with autism. His wife, Holly Robinson Peete, quickly
countered by saying "I was on Get Out of My Way Avenue!" She didn't have time to wait for him. Having a child is special needs clearly
impacted them just like many other couples.
It was inspiring to hear them talk about working through this and saving
their marriage. It was also refreshing
to hear a man talking about his vulnerable side.

Rodney Peete played the quarterback position in professional
football for 16 years. Holly Robinson Peete has been in show business her whole
life. Her father was the original Gordon
on Sesame Street. While Rodney traveled around the country playing professional
football, Holly dealt with the struggle to learn everything she could about
autism while getting the best services possible for their boy. Although it took him longer, Rodney was able
to enter his son's world once he gave up his dreams about taking his son into
the locker room after games.

When RJ was nine years old and included in a fourth grade
classroom, Holly and Rodney went to speak to the class about autism so that his
classmates could understand RJ better. Rodney commented that his knees were
shaking, and he was never more scared in his life. This came from a man who was
used to playing in football stadiums in front of 100,000 people with 300 pound
defensive linemen trying to hit him as hard as they could.

Admitting our vulnerable feelings is crucial for all men,
especially fathers of children with autism. Coming to grips with these
difficulties helps us to “get in the game” and do something positive for our children
and families. Rodney had to rethink what
it meant to be a father to his boy, since he could not duplicate the fond
memories of what his father did with him.
Indeed this is the journey of all parents, but autism makes it more
complicated.

Rodney Peete's book, Not
My Boy: A Dad's Journey with Autism, tells the down to earth story of his
struggle to accept his boy's autism.
RJ’s sister, Ryan Elizabeth, along with her mother Holly Robinson Peete
wrote the children's book, My Brother
Charlie. Through their books and the
HollyRod Foundation, the combination of a strong passionate woman and a man who
can voice his vulnerabilities make them a role model for couples.

When my son was
born in November 1979, I jumped for joy.
When he was diagnosed with autism 4 years later, I thought my head was
going to explode. I couldn’t get the
word autism out of my mouth for months.

In
general, it is harder for men to talk about problems than women. Women seem
able to talk about problems and find comfort without needing to fix them. Of
course, women do want to fix problems. As for men, when we can't fix something,
we don't want to talk about it—and this is a factor in male depression and a problem
in relationships.

As
Nelson Mandela wrote, “A boy may cry; a man conceals his pain.” Boys are still taught at a young age to feel
ashamed of their tender feelings, especially their gentleness, caring,
vulnerability, and fear. What is
acceptable is showing their tough, action-oriented side along with physical
strength. All emotions save anger are to
be hidden even from themselves. So what’s a man to do when his child is diagnosed? How do
you handle that choked up feeling? Men
tend to withdraw and cry on the inside. On
the outside we may be grumpy and irritable, but on the inside we are hurting. This
is part of the secret life of men raising a child with autism.

I
wanted to be a better version of my father when I held my son Tariq for the
first time. I looked at my son and saw
myself, only better. His diagnosis of
classic autism shattered that reflected vision, like a broken mirror. There were no words.

Asking a male how he feels usually evokes an
automatic “I don’t know.” What helps men express themselves when experiencing a
broken mirror with an autistic child, 80% of whom are boys? Try “Guy talk” such as:

• What’s it like for you? (Curiosity
works better than empathy)

• Tell me more.

• I need to know to be closer to you as
your / wife/ friend/ brother, etc.

• Your child needs you.

• Let’s figure out a plan.

Men
respond to making an action plan.This
is a positive part of the male code and not outmoded.Our families need us to be present, and as
fathers we are yearning for connection but lost about where to start with a
child who is so different.

To
find clues, I ask men about their warmest memories of their fathers. Almost without exception they recount doing
things with their dads such as taking a ride or a walk, building or fixing
stuff, going on errands, cleaning up the yard, watching TV, or throwing a ball
around.

Parents frequently confide to me when they have lost
their patience. Fathers as well as mothers share their guilt and their
heartbreak when this occurs. As one mother said to me recently, "My mother
yelled at us, and I vowed to never yell at my children. Now I'm becoming a
yeller. What's wrong?"

Just last week a father told me about how he lost it
with his four-year-old son with Asperger's. After picking up his son from
school, he stopped at the convenience store for his wife to pick up milk for
the next day's breakfast. His son did
not want to stop and had a full-scale meltdown. When he didn’t calm down, his
father started yelling at him. Now just a few days later, his father was
wracked with guilt.

This father like other parents felt guilty. I
assured him that his reaction was not unusual and did not indicate that he was
a bad parent just because he lost his patience. He told me that his son had
made tremendous progress since being diagnosed over a year ago, and he just
couldn't understand this.

I briefly discussed with him that difficulty
regulating emotions was more often than not one of the challenges that goes
along with being diagnosed on the autism spectrum. Changes in routine, such as
stopping at the store, can often be a trigger. This occurs all along the
spectrum from mild to moderate to severe.

By the end of our counseling session together, this
father looked at me and came to his own conclusion. "I have been expecting
too much. That's the lesson I'm learning. I have to do better at managing my expectations;
that's the only way I can remain patient during situations like this."

Of course this sounds simple, but in the moment it
is easier said than done. In order to manage expectations, it is important to
understand the individual developmental profile of your child. The best way to
understand this is to learn everything possible about your child's diagnosis
and communicate regularly with your child's teachers and therapists.

In terms of your expectations about yourself, let's
be clear: it is normal to struggle with your patience in challenging
situations. So the next time your child
has a meltdown, take a breath—or two or three. Then ask yourself what you're
expecting and how reasonable that is in the moment you are presently in with
your child.

Moment by moment, day by day, being mindful of these
issues, you and your child will both grow.